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The B.C. government has added new drugs to the provincial PharmaCare program that slow the progression of amyotrophic lateral sclerosis, or ALS. The disease causes “degeneration of motor neurons and progressive muscle weakness” and “typically causes death within two to five years of diagnosis,” according to the province.
In August, the province said an oral formulation of the drug edaravone, sold under the brand name Radicava, is now covered for patients who meet a specific clinical criteria under PharmaCare.
“This is a very, very big deal — it’s the third Health Canada-approved medication for ALS to ever come on the market,” says Wendy Toyer, executive director of the ALS Society of BC. “The first was approved 20 years ago and now there’s been two more added this year.”
Around 485 British Columbians have been diagnosed with ALS, Toyer says. “Everyday someone in B.C. is diagnosed with ALS. But every day, we’re losing people, too, so the overall number doesn’t increase,” she adds.
An intravenous version of Radicava has been covered by PharmaCare since August 2020. The drug slows the loss of physical function in ALS patients, according to the Ministry of Health.
The Health Ministry predicts around 100 patients will be eligible for either intravenous or oral Radicava treatments this year.
A better quality of life
In July the province also added sodium phenylbutyrate and ursodoxicoltaurine, sold under the brand name Albrioza, to the PharmaCare lineup. Albrioza is also taken orally to slow the loss of physical function due to ALS.
The first ALS treatment to be approved in Canada was a drug called riluzole. Sold under the brand name Rilutek alongside generic versions, riluzole was approved by Health Canada in 2000, Toyer says.
The Ministry of Health says Rilutek and its generics may prolong life expectancy.
Before this summer, patients had to take Radicava or Rilutek intravenously, which meant for two hours a day, five days a week they’d need to be hooked up to an IV, says Toyer.
Some patients didn’t want to take the intravenous treatments because they “wanted to travel” after their diagnosis, Toyer says.
“Now patients can drink the medication — that enhances their quality of life,” Toyer says.
The oral medications can also be administered by feeding tube.
These drugs slow the progression of but do not cure or reverse the disease.
Toyer adds she can think of two people who passed away in June who could have benefited from the medications that have since been approved.
The Ministry of Health says an annual treatment of Albrioza costs $224,000 and Radicava costs $120,000 per year. Both are covered by PharmaCare. Rilutek and its generics are covered on a case-by-case basis and cost around $3,000 annually.
A patient and their doctor will ultimately decide what medications to try and those decisions will be influenced by patient preference, severity of disease and likelihood of receiving more benefits than harms from the medication, the Ministry of Health told The Tyee in an email. Many ALS patients will be treated with more than one medication, the ministry added.
The Ministry of Health says the lack of medications that exist to treat ALS suggests it is challenging to develop effective and safe treatment options for the disease.
That may be true, says Toyer, but look at what happened with COVID-19 when the whole world got behind funding research for vaccine and developed one in a year.
There’s a lot of steps a drug manufacturer needs to go through before its product can be covered by provincial health-care programs, Toyer says.
She says a drug needs to go through four phases of clinical trials, be approved by Health Canada and then each province will negotiate what coverage the drug could receive.
“The process takes way too long,” Toyer says, but adds B.C. moved quickly to approve the oral version of Radicava, which was approved by Health Canada in November 2022.
There is no known cure for ALS.
“ALS is always terminal,” says Toyer. ![[Tyee]](/design-article.thetyee.ca/ui/img/yellowblob.png){kind=small}
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